fiorelli Report post Posted October 31, 2005 Hi All, Was wondering if anyone has had a private consultation/diagnosis for ASD/ADHD etc.? I was speaking with my Uncle (who used to be a social worker for children and adults (adults mainly) with ADHD, ASD, Brain injuries etc. and who has 1 adult son with ADHD and Aspergers and 1 adult son with ADHD and partial sited who both have gone onto University, as well as 2 NT adult daughters, and now runs an ADHD support group in Hereford), and mentioned about the fact that we were having a few problems with Louis. He mentioned about a Professor in [i think West] Sussex who you could have a private consultation with (that would usually take around a day), and he would either agree with any diagnosis, or rubbish it, and diagnose what he thought the problem was. If he thought you needed any medications, this Professor would then be able to write out a private prescription. Now my Uncle said that this consultation usually costs between �300 and �500. Would you go for the consultation even though you already had a diagnosis? If this is the only way of getting the medication your child needs, would you do it, or would you carry on trying to fight the system? Does anyone know who I am talking about, as I can?t for the life of me remember this Professor?s name (other than it began with a ?C?) He has also suggested that we ask the DLA to review our claim (I understand that this may go either way), but in his experience, thinks that Louis should be entitled to higher rate for care. Would you, or have you ever asked the DLA to review? If so, can I be nosy, and ask what the outcome was? He has also said to appeal the decision not to assess for a Statement by the LEA. This we were going to do anyway, but he has confirmed our thinking. Sorry for this being so long. Luv Fiorelli xxx Quote Share this post Link to post Share on other sites
mossgrove Report post Posted October 31, 2005 We have not needed to go for a private diagnosis, but would have done so if it was the only way to move things forward. Sorry to answer your question with another question, but what are you hoping to get from a private diagnosis? Simon Quote Share this post Link to post Share on other sites
fiorelli Report post Posted October 31, 2005 We have no way of getting medication for Louis, despite the paediatrician saying he needs it. She has said she does not have the resources to do al the aftercare (checking his med levels are correct, that he still needs meds etc). We were referred to CAMHS who have refused to see him stating that 'There is no longer any resources to assess children presenting with ADHD, we will continue to monitor those already registered with us' The GP will not prescribe the meds. Don't know why, but they will not prescribe it. Told this to my uncle, who then suggested seeing this Professor, who would then either confirm or rubbish Louis's diagnosis, and be able to give him the meds he needs on private prescription. I don't know if this is the way we want to go, hence why I'm asking on here for other people's experiences. Quote Share this post Link to post Share on other sites
Blue-Kat Report post Posted October 31, 2005 hi fiorelli yes we have had a private dx for my 9 yr old son L. they said he has aspects of AS/ADHD/PDD and severe dyslexia and discussed some things which may help - using photo cards to help with sequencing, and differential behaviour reinforcement. we opted to go private as had some bad experiences with SS and children's hosp with our older kids who have ME/CFS and it made us very guarded. I am going to the GPs this week to ask what local sevices might be available to us, also if she would be able to refer to a specialist, either locally or out of area. I don't think the private assessment of my son is quite right, but I gather that different Docs might interpret the diagnositic criteria differently. or maybe there's political and financial issues? incidentally we sometimes use a reasonally priced private Dr to get treatments for ME ( I have it too) as there's only so much available on the NHS. is it necessary to have your son reassessed in order get medication? as you say the peadiatrician says he needs the medication, but can't provide it due to resources, I wonder if you could contact your local PALS (Patient Advice and Liaison Services) to make a complaint, or indeed your MP ! regards - Katya Quote Share this post Link to post Share on other sites
fiorelli Report post Posted October 31, 2005 I am just in the middle of writing a letter to the 'Service Deveoopment Commissioner (whatever that is ), and CCing to the Clinical Director of CAMHS, and the Head of Service for CAMHS, so will also CC in PALS as well. It is so bad that they will not assess someone *new* because they have ADHD, but will continue with the monitoring and helping of those already on their books. (all 280 of them, lucky things!) Quote Share this post Link to post Share on other sites
Blue-Kat Report post Posted October 31, 2005 it does sounds unfair ! do tell us how you get on. good luck ! - Katya Quote Share this post Link to post Share on other sites
fiorelli Report post Posted October 31, 2005 Do you think I should add copies off the letters/reports that have with the paed saying she thinks he needs meds, but that she is unable to prescribe them, and the letter from CAMHS saying they will not assess, in with my letter? I am thinking yes, but not sure. Quote Share this post Link to post Share on other sites
mossgrove Report post Posted October 31, 2005 It it is a clear-cut case of a pediatrician saying that your son needs medication and has been refused them on grounds of resouces, you would be entirely justified in taking this up with your MP and the local paper! One problem with a private consultation is that it is entirely possible that you would end up with a private prescription as well, and the meds you are thinking of are not cheap. Simon Quote Share this post Link to post Share on other sites
barefoot wend Report post Posted October 31, 2005 Fiorelli Ask your GP if they would consider shared care with consultant so that you pay for appointments with consultant and GP prescribes meds on NHS. Barefoot Quote Share this post Link to post Share on other sites
fiorelli Report post Posted October 31, 2005 (edited) Thanks all. I have just drafted a letter, can you have a look, and see whether it is ok or whether I need to change anything? Dear Mr ASSESSMENT FOR ADHD AND MEDICATION My son, Louis J, was referred to CAMHS by Dr S, Staff Grade Paediatrician, ***** ************ Hospital. He was referred because both herself, and Louis?s GP, Dr W thought that he would benefit from medication for ADHD. Louis has been diagnosed with ADHD and Aspergers Syndrome by Dr S. My son has been denied the option of trying this medication on the grounds that there are no resources available. This is not my sons fault, and he should not have to suffer because there are not sufficient funds or people available to properly oversee assessments and prescription of medications. We have had help from various sources, Paediatrician, Health Visitor, School, School Nurse, Educational Psychologist, Behaviour Intervention Team (through School), all of whom have offered different coping strategies etc. We have tried these various other avenues and strategies before contemplating medication e.g. behaviour management, reward systems, positive reinforcement, picture timetables, diet changes etc. All have had little or no impact on Louis?s behaviour. Medication is our last option for Louis, and he should be given the chance to try it. As a disabled child, my son?s needs are not being met, and I would like your advice on how to meet them. I have enclosed a copy of Dr. S?s referral letter to CAMHS, and their responding letter. Yours sincerely Edited October 31, 2005 by fiorelli Quote Share this post Link to post Share on other sites
mossgrove Report post Posted October 31, 2005 Just about to leave work, so I'll have a proper look later. Is it worth drafting a version of this for your MP? Simon Quote Share this post Link to post Share on other sites
Lindyloo Report post Posted November 2, 2005 Hi fiorelli, THought you would be interested to know that we got Luke's initial diagnosis for ADHD done by a private Child Psychiatrist. He was really good, unfortunately my maedical insurance would only cover the initial diagnosis and 1 other appointment, so after 6 months of paying for the follow-ups we had to move to CAMHS. He did a perscription for Luke's medication. The first one, we did have to pay for a private perscription, but we than managed to sort out a shared care agreement between the Psychiatrist and our GP, so we could then get them on the NHS. We were luck, because CAMHS will not prescribe for under 6, so the NHS has had to find us someone who will (as he is alread on the medication - so they could not expect him to come off again) Anyway, we had a very good experirnce from going private. Even though you already have a diagnosis, I would persue it further if you feel you would have better treatment. Linda x Quote Share this post Link to post Share on other sites
Blue-Kat Report post Posted November 2, 2005 excellent letter. send a copy to your MP too ! - Katya Quote Share this post Link to post Share on other sites
bevalee Report post Posted November 2, 2005 Hi I got a private diagnosis for my son dx AS/ADHD. Camhs would not give him any medication that was suggested by the Psychiatrist as they didn't agree that teenager's should have medication. We had one private prescription from the Psychiatrist and then the GP took over from there. We still have to see the Psych privately every 3 months and he has been great. I don't know what i would have done otherwise. Quote Share this post Link to post Share on other sites
